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I recently wondered why we who live with rare conditions often get told how to feel. I’ve experienced this instruction in many different situations. When strangers see me with my scars and bandages, many tell me, “Oh, no, it must be so awful living with your disease. Your life must…
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Issues with wound healing may play a central role in driving severe forms of epidermolysis bullosa (EB), a new paper proposes. Scientists think that, in EB, wounds may enter a vicious cycle where they become inflamed as they try to heal, but then are unable to resolve the healing…
The just-approved gene therapy Vyjuvek (beremagene geperpavec) soon will be available to people with dystrophic epidermolysis bullosa (DEB) in the U.S. at home and in the clinic. Krystal Biotech, the treatment’s developer, has set up a limited distribution network in the country that includes Option Care Health…
The U.S. Food and Drug Administration (FDA) has approved Vyjuvek (beremagene geperpavec), Krystal Biotech’s gene therapy gel, for treating skin wounds in patients 6 months and older with dystrophic epidermolysis bullosa (DEB). Vyjuvek becomes the first re-dosable gene therapy approved by the FDA, and the only medicine approved…
Columnist Patrice Williams admires how kids with rare diseases are constantly making the choice to be resilient and keep fighting.
Want to stay up to date? Click the link below to find all of the latest news related to epidermolysis bullosa.
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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